One of our researchers talks about life with her younger sister who lives with TS

This blog is written by Diana Beljaars a PhD researcher from Cardiff University in Wales. Diana is originally from Holland and speaks Dutch and English. In this blog article she writes poignantly about her relationship with her sister who has Tourettes Syndrome.

My Touretty sister and me

Tourette´s has been part of my life for many, many years, but came into it since early puberty. Before that time memories stretch back to winter afternoons playing in our play corner under the stairs and summer afternoons playing under the pine tree in the back yard of our parents´ house. Youth pictures in my album mimic the light-heartedness of my memories remarkably well. She was just my sister, annoying as little sisters are, but equally as cute…

Then, things changed. She started doing ‘funny things’ with her eyes and nose, and I remember her being taken to an unending list of doctors. As an unknowing sibling in early puberty herself, I felt her withdrawing from my life, being taken up by her condition.

I, as everyone else, couldn’t quite relate to her as I used to. The condition, that finally could be named Tourette syndrome, both mystified and coloured the image I had of my sister. Sometimes she seemed too far away to connect at all, consumed by her body that made her do things she didn’t want.

Sometimes she did things that intrigued me but could never be understood by me. For instance, not being able to carry the plates with cutlery on them to the kitchen after dinner “because she just couldn’t”. Nonetheless, we fought as fiercely as we found each other in shared obsessions, such as the holiday without our parents in Italy. Despite me not being able to predict her, she was still my little sister and I felt deeply responsible for her. It might be the type felt by each older sister, but maybe also because of her unique vulnerability. Our years in early twenties we grew more apart, as I went off to university. Dealing with my own problems, she left my mind bit by bit.

It was only at the end of my studies in human geography (a social science concerned with the spatial relationship between people and places) that suddenly it hit me: my sister’s condition had highly spatial pronunciation. With her touch tics she used the objects that made up her everyday environments in a such a specific and unique way that I decided to combine my understanding of the disorder and knowledge and skill human geography. With the research proposal she came flaming back into my life.

We went to a conference on Tourette’s in Greece where she, as subject of their study, spoke to a big room filled with people. Twice. I couldn’t be more proud of her. It was in that moment that I recognised the little girl I used to play with in her. I realised that she couldn’t have been more herself in the moment, and that the Tourette’s had never mystified and coloured her: it was me the whole time. I, as product of a society that values the normal and logical in people drastically failed in understanding the beauty in her tics and twitches. Now, my sister and I get along better than ever. She is just my sister, annoying as little sisters are, but equally as cute.

If my research is good for anything, it is in the fact that an inability to relate to a different form of humanity should invoke an openness to its capacities. Or put simply, if you can’t understand why somebody else is different, you should be open to understand what makes him/her beautiful and capable of extraordinary achievement.

Diana’s sister has been blogging for Teens4TS for more than 2 years now. Read all about her adventures here!

TS Success Stories: Jackie, 20

Would you like to share your TS story? If so, please send a private message to my Facebook page or send me an e-mail at jspershing93@gmail.com. Please answer these questions (by either typing them out or videotaping) and send a picture or two to go with it! Then I will post your story on this page!

My story! Jackie’s Life with Tourette Syndrome 

Q: What is your name and how old are you?
A: My name is Jackie, I’m 20 years old, and I’m a Junior in college.

Q: How long have you had Tourette Syndrome?
A: I’ve had Tourette Syndrome since I was 3 years old. I was misdiagnosed for a long time though and for that reason I wasn’t officially diagnosed by a neurologist until I was 17.

Q: What kinds of tics do you have?
A: I’ve had to many types of tics over the years, but right now some of my tics are facial grimacing, blinking, rolling my eyes, head jerking, punching my arms outward, hitting objects around me with my hand, sniffing, coughing, and high pitched noises.

Q: Do you have any associated conditions?
A: I have OCD, anxiety, and sensory processing issues.

Q: What is life like for you living with Tourette Syndrome?
A: Living with Tourette’s has it’s challenges. I wake up every morning knowing that I will move through may day jerking my head, rolling my eyes, hitting , and making noises among many other things, but this is my normal. When it relly comes down to it , Tourette’s has given me so much more than it has taken from me. It has given me an amazing community of people who I will never take for granted. I would have never met my amazing camp twitch and shout family, the people who I do research with, or my Tourette’s Syndrome Association friends if I didn’t have TS. Tourette’s has also given me confidence. I don’t mind explaining or answering questions and I love educating people about TS. In fact i’m going to be educating 200-400 medical school students about Tourette’s in September! Having Tourette’s is a unique experience and the opportunities that have come from having TS have enriched my life more than I would have ever known. Like one of the nurses from camp twitch and shout said “people with Tourettes are not the ones that are disabled in our society, it is the “normal” people that are handicapped in the depth and beauty of life.”

Q: What advice can you give others who are newly diagnosed with Tourette Syndrome?
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Market research study for teen Tourette patients

PLEASE NOTE: Teens4TS, the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS), and its directors and employees assume no responsibility for the accuracy, completeness, objectivity or usefulness of the information that follows in this blog post. None of the stated parties endorse any part of this post. It is merely being posted here for informational purposes only at the sole discretion and responsibility of MedQuery, Inc.

7 strategies for highly successful teens

Vanessa Van Petten is the founder, CEO and lead writer for Radical Parenting.

Hi! Happy New Year! I’m so excited to announce a new life-changing program I have created for teens. In this fun, entertaining and inspirational talk I go over the 7 strategies for highly effective teens. This is nothing like your typical high school presentation. Here are some highlights:

  • Groundbreaking research insights about the teen brain and behavior
  • Hilarious and inspiring videos
  • Immediately applicable action steps to motivate and encourage teens from all levels
  • Relatable stories for teens to feel engaged and understood

I can’t give too much away, but in this talk we delve into both the lighthearted and serious issues teens face including:

  • Effective communication with peers, parents and teachers
  • Mastering the online environment — preventing cyberbullying, staying savvy online and building a digital reputation that lasts
  • School — life balance, reducing stress and finding the right outlets
  • How to have healthy relationships with the important people in a teen’s life
  • Planning for the future, smart college applications, resume building and finding your life passions

I am stoked about this new talk and have already booked out January, February and March at High Schools, youth conferences and Parent groups around the US. Please contact our manager Lynn Campbell for pricing and date availability at manager@radicalparenting.com.

Find out if we might already be coming to your city! And yes, of course, we have tween, parent and teacher versions!

School, social media and life … take up a lot of time!

I’ve been meaning to write a blog for a long time now, but I’ve been SOOOO busy these past few, well, months! I’m graduating this coming spring, and it takes up more time than I thought. Which is pretty normal, I guess, but I’ve been ignoring that the first few months of the school year.

The thing is, I have to make a thesis, which consists of research and than a practical part, in which I have to test my research results. But to do research, you have to read a LOT. And that’s my problem, I have very little concentration and because of that, I don’t like to read. Well, to be honest, I’m afraid of books.

All the time when I’m reading, I really struggle to have enough concentration to even understand what the book says and that constantly reminds me of the fact that I have Tourette and that, because of that, there’s something I cannot do. I don’t like it when I’m reminded of that, and I’m actually really afraid of that feeling, so books were just not my thing..

For the first few months I just ignored the fact that I had to read, but that also meant that I fell a few months behind. So I finally decided to go back to my psychologist and have a session of EMDR, which is a great therapy that helps me with just about anything.

After one session it was way better, and now I’m almost back where I have to be to graduate and turn in my thesis on time. I’m still struggling to start working on it every time I need to, but I noticed I wasn’t the only student — especially not the only student with Tourette — who has that problem.

I don’t really know how to change it, except for working late at night. But that only makes it worse in the morning, and I still have two days of interning every week, so I have to get up early those days. I do keep my free Wednesdays and weekends, to rest, otherwise I go crazy. So I only have two days a week left to work on my thesis and other school stuff, but that’s OK. In the end, I really think it’s gonna be OK and I will be able to turn in my thesis on time and, if so, I might even graduate early!

To end on a positive note: The Dutch TSA is now the third most influential patient organization on social media in THE ENTIRE COUNTRY (The Netherlands)! And that’s for a big part because of me! I did a social media course a few months back and now everything is organized, and I really know what I’m doing, so our Kloutscore went up big time!

We now have way more influence and also much more interaction, followers and likes, and I’m really proud of that! Of course, it takes up a bit (more) of my time, but I really love it! It’s really a lot of fun doing it and seeing my follower count go up every day :) So … NJCTS, need a pro to run your social media? ;)